Starting Chemo September 2015; join us!
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((((hazel_nut)))) so very sorry for the loss of your friend (((((more hugs))))
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Congratulations to everybody surviving their chemo this week! I am starting to feel like a big baby, I get my next (4th) dose next week Thursday. It will be a combination of three drugs I haven't had before. Why oh why did the initial oncologist explain treatment like this: " first you'll get three rounds of rather EASY chemo, then three of the ROUGH STUFF? The "easy" Herceptin/Taxotere has had me on my knees so many times, I'm scared can I make it through the last three rounds? :
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^Annie, thank you. Your posts always hit home. Consider yourself hugged.
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Tessu - Do you know what your next three round drugs are? If they are adriamycin and/or cytoxan, that's the combo I just complete four rounds of. Perspective: two of the rounds were rough (but ultimately manageable), a third was okay and the most recent (Tues) round SEs have been the easiest: only fatigue, mouth sores (controllable with rinse) and sleeplessness from steroids - zero nausea.
Find out what you're getting and seek experiences and tips from others here. I've found these brave ladies' advice invaluable. You are not a baby. If you're still standing, you're tough as nails. You will make it through these next rounds.
All - Minor tip on the cheapest-pharmacy question: I'm a Costco member and have found their Rx's to be the cheapest. I had to have Lovenox for my port insertion surgery and they had the best prices. If you or a family member have a membership, check them out.
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Minnesota_Lisa, thank you for mentioning Costco.In many states, including California, state law prohibits Costco from requiring you to be a member to get prescriptions filled there, so you don't even have to be a member to get prescriptions filled there. Worth checking out.
That said, I think much of the difference in costs and co-pays that people mention are not a result of differences set by the various pharmacies. Co-pays are usually set by your insurance plan.
Octogirl
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Annie your list is right on!!
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Dammit I've gained 8 pounds! I've been hoping for weight loss. This chubby girl can't catch a break.
Well it's my own fault as I sit here scarfing a home made breakfast crunchwrap.
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SC, my page is doing the same thing.
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Guys,
If you find that you have a prescription that's not covered there are companies that provide free prescription discount cards. One of them is a client of mine - ScriptSave. Here's a link to their website where you can download a prescription discount card.
https://www.wellrx.com/Enrollment/EnrollThey also just launched a mobile app.
When they first started with me as my client I had my Mom get a card and try it out (she's on medicare and was often falling through the donut hole having to pay out of pocket for hundreds of dollars of prescriptions). She tried it with a prescription that was going to cost her $300/month. It reduced the cost to $100/month. Not free, but I've been impressed with the help they can provide if you're stuck with uncovered prescriptions.
Hope it helps!
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octogirl - Agree on the co-pays, etc. Some folks are pay-as-you-go, so worth mentioning for them.
edwsmom - Thanks for the ScriptSave recommendation.
SouthernCharm - Woo hoo on no nausea! This week's round has been nausea-free for me and it feels like winning the Powerball.
SouthernCharm & Annie - My weight has been so variable for the past seven weeks of A/C rounds. Sometimes I have lost or gained 4-5 pounds in just a few days. My steroid-fueled eating this past Tues put me up 3 lbs in one day (!), so trying to coax it back down. Sheesh.
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yesterday I woke up with a rash on my upper back. Fast forward to 2:30 am, post-Benadryl. My bald head is on fire as are other areas. Call on-call MO (again) and straight to the ER. Doing better (and home now) still itchy places but SO much better. Me thinks my body says no to taxotere yet again
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Minnesota_Lisa: My next three rounds are CEF75: high dose Cytoxan + Epirubicin + Fluorouracil.
According to my support nurse, side effects include nausea (main one), mouth sores, loss of all hair everywhere, and either diarrhea or constipation, depending on how your body reacts to the chemo plus anti-nausea meds. Also white cells/granulocytes drop for longer than with the Taxotere/Herceptin, but they are letting me continue Neulasta. And very small chance of heart damage. I don't really want to know if there is anything else
They are planning on giving dexamethasone for 4-5 days, + Zofran + Aloxi(sp?); then dexamethasone plus something else for home use. Meant to ask about anti-nausea SEs here: which of those is the one that turns your bowels to cement and gives the killer headaches? Maybe I can skip that one?
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Anyone else getting thick feet calluses?0
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Thanks Minnesota_L… I had a long frustrating delay in my chemotherapy to reflect on this sucky cancer and went to some therapy and personal stages of grief. It happened after my first Chemo after my hair fell out. I developed a wound that wouldn't let me have treatment. Each week I would go to the cancer center. They would look at the wound and then tell me if I could have Chemo again. It went on like this for 8 weeks. I think I went out of my head during that but I grew from it and learned some new coping mechanisms.
For those of you that might be struggling the local cancer center might have a counselor/social worker you can talk to. Its the best therapy because you can unburden yourself without dumping on your friends and family ( mine have already supported and listened until they are exhausted themselves). I have received some very supportive advice and help in getting through treatment. I also learned mindful meditation. I try to do this 5 minutes twice a day to keep from going out of my mind.
One thing the counselor talked with me about is this feeling I have about Cancer running my life. I feel some days like it is this dragon chasing me everywhere and controlling so much of my happiness and my life. I can't eat out as often, exercise as much, it changes my relationship with my friends...its so consuming.
My counselor talked to me about finding ways to see my treatment as a disobedient dog on a leash. To work on ways to keep it from dragging me down the road. To find ways to make peace with the journey and the path. She didn't tell me to make friends with my Cancer that is impossible but there has to be some way to go through the day without feeling overwhelmed and overtaken.
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Exercise, thank you for that.
That's really the one thing I've been struggling with most - feeling like the cancer is the center of my life. I feel like I have nothing to talk about. I have no fun things planned coming up. People ask me what's new and I have nothing to share. It's sort of surreal. Like life is on hold and totally unsatisfying.
I told my husband that when we get to next Spring (after surgery and radiation), I'm booking us a LONG family vacation so be prepared to take like 2 weeks off from work. We had no vacation at all this year and I need something to look forward to.
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Tessu - Not exactly my treatment, but close enough and the SEs match perfectly. I got a heart scan pre-chemo to ensure there were no lurking issues the chemo might worsen. (Yeah healthy heart!)
I didn't get warned upfront about the constipation possibility (grrrr), but after not pooping for FIVE DAYS after round 1, I learned my lesson. If you get constipated, eat high fiber food and/or take a laxative daily. (I have no idea which of the 9,000 chemicals I was given causes that lovely SE.)
The anti-nausea oral drug I took at home ("Compazine" here in the U.S.) + Dexmethasone have been effective for me and I hope they are for you.
Having just finished round 4 this past Tuesday (a delightfully nausea-free round finally!), I am sending you good energy for passing through these next treatments. You will make it. <<<TRANS-ATLANTIC HUGS>>>
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Hi ewdsmom I know what you mean about life being on hold. Its like being in a valley youre not dead but you dont feel alive either. I miss my energy I was always up for anything. I look like shit Im tired all the time Ive gone from being an energetic 46 year old to a frail creaky old women. I have this cough that just wont piss off. I am so looking forward to 2016 which is not that far. We must keep our eyes on the finish line this is now a mental battle we must push through.
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edwsmom - I am on a similar schedule (finished in the spring if none of my treatment phases is delayed too much). I've already warned my husband (who doesn't like to travel) I will be south-bound at that point - with or without him!! I'm thinkin' Florida Keys.......
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Southern - I adored the "Dammit Frank" laugh - thank you from someone who totally lost her temper over two nested ramekins that refused to separate after a whirl in the microwave. How bad?, you ask? So bad I would pay serious money to keep a video of that rant off the internet.
I enjoyed the stories about your MIL. Sounds like Paul didn't fall far from that wonderful tree of love - you're both lucky. We vent here, do what we need to do and get back to this additional JOB fate gave us: working on surviving treatment.
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Tessu, my MO told me Zofran is the constipation, headache causing anti nausea medication.
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My insurance company denied it again because CVS had it pre made! So I guess I will have to go back for another infusion on the weekend. So they can pay $1000 because all I need is a way to eat without being in utter agony.
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When I had bad mouth stuff going on during the first round I just drank milkshakes. The cold was nice on a sore mouth and lots of calories.
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Had to go for bloodwork today to see if I canget a tx next week. My platelets are only 67. I must go get them rechecked on MOnday. The nurse said if I have any bleeding from my nose or lips ? to go to the ER
Anyone familiar with this problem and can comment
Thanks Rosieo
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annie ROFL this sums up the entire week of this thread. How to eat and how to poop.....
I am having a really tough week with both.
Southern: thank you for the mouthwash from Walmart. I have also been using sensodyne toothpaste. So far so good.
So I am not the only one dreaming of trips next year. My husband and I are buying a RV or a trailer. We are going to use it all summer. We are avid campers and backpackers but I think this is the year that I I realized we might want to join middle age and have a trailer we can pull out every weekend. Its the packing that gets to me. Also my kids have become great swimmers and biking companions so the trailer can hold Kayaks, Fishing poles and Bike racks. I daydream to cheer myself up about places we are going next year. We might revisit some biking trips with the kids. I am in Idaho and there is this great ride through tunnels ( Haiwatha Trail) made from old railway lines. Its a nice ride my kids would enjoy it ( my husband and I went on a second Honyemoon on our own). It has a water park nearby and is on the way to Glacier national park. Thats my daydream for today.
Also Pinterest. That is my other favorite guilty daydream pleasure
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Daydreaming sounds good. I too am looking ahead to travel. We usually go to a convention in May in Vegas and I'm so looking forward to enjoying margaritas on Cinco de Mayo by the pool...ahhhhhh, please let this happen!
I had infusion # 5 (first taxol) of 8 so I'm seeing the light. So far so good, not feeling anything. I took the steroids last night and early this morning. They gave me a Benedryl tab and Ranitidine tab before infusion. No reaction so I'm optimistic.
I needed a good outcome today. This morning my oldest son was admitted to Rehab. My husband and my sons girlfriend took him in as I couldn't be there because it conflicted with my chemo appointment. Lots of tears this morning and I felt like a complete failure as a Mother, not being there for him. I spoke to him by phone and reminded him that he is not alone. I too am going through hell to come out better and we are both fighting for our lives. I'm greatful I found a local facility that is private and small. We will be able to visit weekly and thats important as he will likely be there for 90 days. It looks like we both will have the same end date or very close. Weird how that happened.
So...I think I get a pass on horrible SE for the foreseeable future as my heart is heavy and my tears won't stop.
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Dear Lord please give Lindy a restful week free of side effects. Hold her baby boy in your arms as he breaks free from addiction. Let them both be surrounded by the love and protection of the Holy Spirit. In Jesus name, amen.
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Annie...thank you. When I said chemo was the hardest thing I'll ever experience, I was wrong.
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Lindy (((hugs))) to you and your family. Great big ((((((((hugs))))))))
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